Does society wish to prioritise end-of-life treatments over other types of treatment?

Koonal ShahPresentation at Priorities 2016Birmingham ● 7 September

Does society wish to prioritise end-of-life treatments over other types of treatment?

Presentation at Priorities 201607/09/16 2

• This research is a collaboration between Koonal Shah (Office of Health Economics; University of Sheffield) and Professors Aki Tsuchiya and Allan Wailoo (both University of Sheffield)

• The literature review reported here is in-progress and its results should be treated as preliminary

• The views, and any errors or omissions, expressed are of the presenting author only

Preamble


Criteria that need to be satisfied for NICE’s supplementary end of life policy to apply are currently as follows:

NICE end of life criteria

C2

The treatment is indicated for patients with a short life expectancy, normally less than 24 months

There is sufficient evidence to indicate that the treatment offers an extension to life, normally of at least an additional three months, compared to current NHS treatment

The treatment is licensed or otherwise indicated, for small patient populationsC3

C1


• Placing additional weight on survival benefits in patients with short remaining life expectancy could be considered a valid representation of society's preferences

• But the NICE consultation revealed concerns that there is little scientific evidence to support this premise

• Two (unpublished) reviews of the stated preference / empirical ethics literature undertaken in 2011 did not identify many relevant studies

NICE end of life criteria (2)


• To review the published literature that is relevant to the following research question:

Do members of the general public wish to place greater weight on a unit of health gain for end of life patients than on that for other types of patients?• To identify the extent to which public preferences on this

topic have been studied in the peer-reviewed literature• To provide an in-depth account of the methods used to

elicit preferences and the findings of the studies, with the intention of informing policy decisions and future research in this area

Objectives


• Primary source of data: electronic search of the Social Sciences Citation Index (SSCI) within Web of Science

• Follow-up of reference lists of articles identified using the final SSCI search

• Articles already known to me that met the criteria for inclusion

Data sources


("end of life" OR severity OR terminal OR “life expectancy”) AND preferences AND health AND (respondents OR subjects OR participants OR sampl*)

• Yielded 598 unique results

Final strategy


To be included, articles had to meet all of the following sequential criteria:1. Publication: Article must be published in English in a peer-reviewed

source.2. Empirical data: Article must review, present or analyse empirical data.3. Priority-setting context: Article must relate to a health care priority-

setting or resource allocation context.4. Stated preference data: Article must report preferences that were

elicited in a hypothetical, stated context using a choice-based approach involving trade-offs.

5. End of life: Article must address the topic of giving priority to end of life patients (i.e. patients with short life expectancy) or to treatments for such patients.

6. Original research: Article must present original research and must not be solely a review of the literature.

Selection of studies for inclusion


Search results


Summary of included studies (n=17)

Authors (date) Country Sample size (type) Method Mode Summary of primary study objective(s)Abel Olsen (2013) NOR 503 (public) Choice Internet survey To test for support for end of life prioritisation and the fair innings approach

Baker et al. (2010) UK 587 (public) DCE CAPI To test for support for multiple prioritisation criteriaDolan and Cookson (2000)

UK 60 (public) Choice Focus groups Qualitative examination of support for multiple prioritisation criteria

Dolan and Shaw (2004)

UK 23 (public) Choice Focus group To test for support for multiple prioritisation criteria

Dolan and Tsuchiya (2005)

UK 100 (public) Choice; ranking

Self-completion survey To compare support for prioritisation according to age vs. prioritisation according to severity/life expectancy

Kvamme et al. (2010) NOR 2,143 (public) WTP Internet survey To test for non-linear utility of short life extensions from an individual perspective

Lim et al. (2012) KOR 800 (public) DCE Internet survey To test for support for multiple prioritisation criteriaLinley and Hughes (2013)

UK 4,118 (public) Budget allocation

Internet survey To test for support for multiple prioritisation criteria

Pennington et al. (2015)

Multiple 17,657 (public) WTP Internet survey To compare WTP for different types of QALY gain

Pinto-Prades et al. (2014)

SPA 813 (public) WTP; PTO CAPI To test for support for end of life prioritisation and to compare support for life extensions vs. quality of life improvements

Richardson et al. (2012)

AUS 544 (public) Other Internet survey and self-completion survey

To test a technique for measuring support for health-maximisation and health sharing

Rowen et al. (2015) UK 3,669 (public) DCE Internet survey To test for support for multiple prioritisation criteriaShah et al. (2014) UK 50 (public) Choice Person interview To test for support for end of life prioritisation

Shah et al. (2015) UK 3,969 (public) DCE Internet survey To test for support for end of life prioritisationSkedgel et al. (2015) CAN 656 (public, decision-

makers)DCE Internet survey To test for support for multiple prioritisation criteria

Stahl et al. (2008) USA 623 (public) Choice Internet survey To test for support for multiple prioritisation criteriaStolk et al. (2005) NLD 65 (students,

researchers, health policy makers)

Choice Personal interview To test for support for multiple approaches to priority-setting


Summary of findings

Freq. %

Overall finding: end of life premium- Evidence consistent with an end of life premium- Evidence not consistent with an end of life premium- Mixed or inconclusive evidence

773

41.2%41.2%17.6%

Overall finding: quality of life-improving vs. life-extending end of life treatments- Quality of life improvement preferred- Life extension preferred- Not examined / reported

21

14

11.8%5.9%

82.4%


Distribution of selected variables, by overall study finding

* Study combining PTO and WTP methods counted as two studies since separate results are reported for both. Study combining ranking exercise and other choice exercise counted as one study since this is considered to be a single hybrid method.

Variable Evidence consistent with an end of life premium

Evidence not consistent with an end of life

premium Country - UK - Europe (non-UK) - Rest of the world

2 3 2

4 2 1

Method*

- DCE - Other choice exercise - Willingness to pay - Other

2 2 3 1

2 3 0 2

Mode of administration - Internet survey - Other

5 2

4 3

Indifference option(s) offered? - Yes - No or not reported

5 2

1 6

Visual aids used? - Yes - No or not reported

5 2

2 5


Discussion point: choice of method

• Most studies asked respondents to adopt a ‘social decision maker’ perspective

• The three willingness to pay (WTP) studies asked respondents to adopt an individual or ‘own health’ perspective

• But are WTP valuations made by individuals facing the (hypothetical) prospect of imminent death a useful way of guiding decisions about how to spend a common pool of funding?


Discussion points: indifference options and visual aids

• Studies offering opportunity to express indifference between alternatives were more likely to report evidence consistent with an end of life premium than those that did not

• Way in which indifference options are framed may affect respondents’ willingness to choose those options

• Trend towards discrete choice experiments administered via internet surveys suggests that indifference options may become less frequent

• Studies that used visual aids were more likely to report evidence consistent with an end of life premium that those that did not

• Could graphical representations unintentionally lead to different respondents interpreting the information in different ways?



Discussion points: age and time-related preferences

• Majority of studies included patient age in the study design• Some evidence that respondents become less concerned about

the number of life years remaining when the patients in question are relatively old

• Few studies mentioned time-related preferences; even fewer attempted to control for them

• Could an observed preference for treating patients with short life expectancy be driven by concern about how long those patients have to ‘prepare for death’?


Conclusions • Primary finding is that the existing evidence is mixed• Gaps in the evidence base and recommendations for

further research• Test robustness of results by using multiple methods or

designs • Understand the extent to which respondents agree with

policy implications or researchers’ interpretations of their choices

• Further investigation of preferences regarding ‘preparedness’ would be welcomed


To enquire about additional information and analyses, please contact Koonal Shah at [email protected]

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Does society wish to prioritise end-of-life treatments over other types of treatment?